An observational study in Alpha 1-Antitrypsin Deficiency, sponsored by Alpha-1 Foundation. Recruiting at 1 site in United States. Per ClinicalTrials.gov, last updated 2026-08-19.
Sponsored by Alpha-1 Foundation · Observational
The Alpha-1 Research Registry is a confidential database made up of individuals diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) and individuals identified as Alpha-1 carriers. The Registry was established to facilitate research initiatives and promote the development of improved treatments and a cure for Alpha-1.
The purpose and goal of the Alpha-1 Research Registry (Registry, or group of patients) will be to obtain uniform, longitudinal (over the course of time), complete and accurate data that can be organized, and made available for the public to query. The collective number of Registry members enables investigators to enroll sufficient subjects to carry out their studies. The community benefits from having more research and potential therapies performed in their disease. Regular updates from patients will give objective data-points to measure the progression of disease.
The current protocol seeks to enroll 4,000 individuals of all age, race, and sex.
Exclusion Criteria:
Larger patient cohorts are needed to support the clinical trials coming in the next 3-5 years. Despite widespread invitations to the Alpha-1 community from the Alpha-1 Foundation Research Registry, it is estimated that the Alpha-1 Foundation Research Registry now contains \<40% of the identified PiZZ individuals in the US.
Larger patient cohorts are needed to support the clinical trials coming in the next 3-5 years. Despite widespread invitations to the Alpha-1 community from the Alpha-1 Foundation Research Registry, it is estimated that the Alpha-1 Foundation Research Registry now contains \<40% of the identified PiZZ individuals in the US.
Establish the Alpha-1 Research Registry using REDCap
To gather accurate patient data for longitudinal prospective follow up/analysis of Alpha-1 progression.
Time frame: 8 years
Plan to share: Undecided
No publications or documents are linked to this record.
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alpha 1-Antitrypsin Deficiency
Alpha-1 Foundation